Venting....BEWARE

Before I start, I want to say that we have it easy compared to a lot of other families out there!  We feel lucky that things tend to always work out.  We know that what may seem like a frustration to us, is something someone else would be thankful for.  We get it....BUT...sometimes things just irritate me, and I have the right to express it, just like anyone else, so I will vent to all of you!!!  Besides, I think I have been mostly positive thus far, but if you really want to know our whole story, you'll have to hear about the bad days too...

So some days(and even weeks) I feel like a secretary.  I can spend hours on the phone just taking care of appts, etc for my kiddos.  No big deal.  I liked being a secretary when I had that job;). What frustrates me more then ever at this point in my life.....insurance companies and stupid people!  I don't mind being on the phone all day taking care of stuff for my kids, because it's my job, but guess what....if I am calling your business, it's  also your job to be courteous to people and to at least pretend you care.  What is wrong with people today that they just hate working while they are at WORK!  You should be thankful to have your job.  There are a lot of people out there who would love to take your place!

I realize this is a 2-way street.  I know people who call businesses can be turds too, so i get that! I know how frustrating it must be to have someone on the other end of the phone being rude....wait....isn't that my point???  But every new call should be that...a new call!!  Most of the time I can kill them with kindness, but sometimes you just have to tell people that just because your miserable, don't make everyone else's day miserable too.  This frustrates, me the most when these people are working in a field that deals with children.

Now this leads me to the stupid insurance companies.  What does it take to get good insurance without selling your children and eating franks and beans everyday to pay for it.  Then when you do these things, they still don't cover anything!!!!!!!!!!!!!!!!!!  Oh, I cut off my arm and give it to you every month........oh, thats not enough, we still need a$3000 deductible.  You try to buy the non-HMO because it's supposed to NOT manage your healthcare, but yet they still do.  One of my favorite experiences was, I was once told by Blue Cross that they wouldn't cover Patricks physical therapy(which was a covered benefit) because their doctors didn't think it was necessary for him to have it.  You can imagine how pleased I was by this statement.  Basically I told her I was thankful for those doctors and their hard work behind their desk, diagnosing my 3 year old who has a rare genetic disorder, who can't walk, crawl, speak, etc., and for looking out for his best interests.  He doesnt need therapy, what was i thinking???  Thanks to those doctors for taking the time to get to know Patrick and realizing he didn't need it.  Sigh....

Then we pay into a secondary insurance to help offset some of the deductibles, and things not covered, only to find out, they don't cover half the stuff that they used to.  So we have to now look into a 3rd for Patrick that will cover more medical supplies or we can pay $1.50 per diaper when he outgrows the store ones.

Right now we are just trying to get him a bath chair and a big boy bed that will keep him safe, because he doesn't realize when he is rolling around.  We started this in March.  We are still getting letters that they need more information as to why he needs them.   WTF???  The letter and info we have already sent them over the past 5 months still isn't enough???  What is wrong with this picture???  I would rather have them just come to my house and meet him.  No we are not scamming the system....we actually need it.

 Like I said, we are only one family going through these things, just like millions of others out there, who have much more frustrating stories than me!  I read about all of our other PKS families and the things they endure to make sure their children have what they need.  As well as just people and families in general who are trying to get by like this.  But the thing is, it can wear you down, then fire you up to do more.  What else can you do right??   I do want to do more to change things, I just don't know what it is yet.....

I need to stop now because nap time for the boys is over.  I wont apologize if people thing i am complaining, because I am not.  This is my therapy because I cant afford to go to a real one because all my money goes to the insurance companies and its not a covered benefit!! Thanks for listening to my brief vent...it was therapeutic:)

Ending on a happy note....a few pics:

Avery driving with Uncle Brian

My boys watching baby Einstein :)

My Avery....

I could write a book about my Avery.   I truly believe we all have a purpose and I always knew that Avery would have many.  She has always been such a sweet, easy going kid.  I don't want people reading this and thinking, "Oh God, she is bragging about her kid."  Well, yes I am.  I don't brag about her too much, but I am allowed:)

Since Bubby came along, Avery's life was forever changed.  She went for 8 years as an only child.  She spent so much of her life around adults, because she was the first grandchild.  She loved Patrick and being a big sister from the start.  Never was jealous, or had a hard time with the transition.  I think part of it was because of her age.  Avery was with us the day that Patrick was diagnosed.  She sat in the room and heard everything the same time we did.  Mind you, we didn't realize they would know anything at the initial consultation, but his doctor was spot on.    So not only did we have to process it, so did she.  But she did it in the same Avery fashion as she does with everything else.  We talked with her and the doctor and genetic nurse spoke with her everytime we went in.

We had know idea how PKS would affect us, let alone Avery.  Would she get upset with the extra attention that he may require??   There are so many things that Avery has had to compromise on and never complains.  She doesn't even realize she is compromising, its just our way of life.   She doesn't complain when I have 4 days in a row of appts or therapy, she just knows its what has to be done for her brother to help him and she just goes with it. She doesn't know it any other way.  Which we are grateful for..  She plays with Patrick, reads to him, holds him and just loves him!!  We couldn't be more proud of her.

Bubby in a stander at therapy

Now throw Jameson in the mix and this poor girl is just in trouble :)  I mean this in the nicest way possible.  I love both my boys dearly, but they are definitely a handful together.  They feed off of each other.  Jameson screams, so Patrick does because it annoys him.  Patrick tries to get his voice in the room very loudly and Jameson tries to out do him.  Its quite entertaining actually:)  Going anywhere takes twice as long.  Carrying 2 kids to the car, getting them in their carseats, double stroller or 2 strollers, packing food, etc to keep them entertained while we are there to limit breakdowns. blah blah blah.....you get the point.  I love being home with them and being able to do these things, but in the midst of all of this, I have to think about how it affects Avery. But realistically it really doesn't affect her. Its more me over analyzing it.  Our life is what it is. We are much more fortunate then a lot of people.  I am glad that she is growing up in the family that we are.  I want her going through life knowing that not everyone is the same and sometimes, other people may need a little more help with things. Families shouldn't all look the same.  People don't all look the same.  Everyone's situations are different, and thats the way it should be.

Monster Jameson eating spaghetti:)

So there are many days when we have things planned and we just have to change it, like today :)  Patrick decided to get up at 4:30 and party.  He was happy as could be, but LOUD and chatting away:)  So then Jameson got up.  Luckily, he was easy to put back to bed and I brought Patrick into bed with us and cuddled while he told stories.  He eventually fell back asleep around the time Tim got up.  We had plans to do things, and I still tried, but both boys were incredibly cranky....so instead, I am letting them rest and here I am typing, we will try again this afternoon.  I know with both of them its not worth trying to take them out on certain days like this by myself.  It would be painful for all involved :)  Some days I will, but I can usually tell by how fussy they are.

I couldn't put these pics where I wanted because of my iPad:(. Sleeping bear dunes:)

Sleeping bear dunes on a cloudy day.

Visiting Cherry Republic and spitting some pits:)

So we try to make an effort to do things with just Avery. Lately we go up to the park and play a little softball with her.  She loves to play cards and board games, so we will do that after the boys go to bed.  We decided that we would take her on her own weekend trip up north (if your not from Michigan, thats where most people go on weekends....pretty much anywhere north of Grand Rapids).   We went to visit our friends Will and Bernie, near Traverse City.  Will went to Western Michigan with Tim and I call him his man wife.  They are the amazing friends who we called and said we were moving back to Michigan, and they said without batting an eye, that they would be down to move us :)  They both come from amazing families who make you feel right at home when you're with them.  They all knew this was Avery's weekend and treated her like royalty.  She got a tour of Northwoods Soda, got to ride a Mule with Bernie (quite entertaining), sat by a fire, got to go watch live music, sleeping bear dunes, visited Cherry Republic and spit cherry pits, but best of all, got to play cards with a good ole northern Michigan family.  There is nothing like it!  She LOVED it!!!  It was nice to just hang out and relax with her and Will and Bernie's family.  I can't say enough about them!!! 

The best part was just to do things with Avery, without scheduling around the boys.  She had so much fun and it was definitely worth doing.  I hope to do this with all 3 of the kids.  Bubby and I get our own little time a lot.  We venture out to certain appts. together without the other 2. My favorite thing is when Jameson is in bed, its almost like Patrick knows.  He is so happy :)  So sometimes we feed him a little ice cream and just let him hang out while we play games with Avery :)  Jameson will get his alone time too, when he isn't already the center of attention.  This kid is truly one of a kind...and I mean that in the best way possible!

I guess I overanalyze things sometimes.  Wait...no...A LOT.  I know it drives Tim crazy :)  But I feel like Avery is at that critical age, where we need to make sure we are helping to guide her to make good choices.  Sometimes I feel like we have to stop and just make sure we are letting her do the fun, kid stuff too, because she is growing up so fast....tear :(